We have entered a new phase of our lives as a family with Daisy, the phase where there is nothing more that can be done, where the only active treatment now is the maintentance of her nutrition and management of her pain, no more tests that will change things, no more operations, there will be no transplanting of diseased organs for new ones (because the increased cancer risk of Costello Syndrome rules out the immunosuppressant therapy a transplant requires), no more long hospital stays, no more invasive procedures unless she is in a life threatening situation. From now on all care will be managed at home unless Daisy's life is at risk.........and far from being depressing, this feels fantastic!
Now we have our daughter back and our family together. Now we have accepted that the doctors have reached the end of the road we can concentrate on what is important - time together as a family and for Daisy, time to be a little girl again.
Daisy has enjoyed the run up to Christmas in school, playing an angel in her nativity and stealing the show when she told the rest of the cast to be quiet because Baby Jesus was sleeping. She has had some fun times at our hospice and we have paid a visit to Santa to tell him what is on her Christmas list.
The price we pay is that our workload has gone through the roof and we still live with the worry of bugs and germs and infections and the responsibility we now have to decide whether or not to manage and treat her at home or to take her into hospital. Years of living with Daisy have given us the instincts which tell us when to act, such as yesterday when we happened to be at Great Ormond Street for the annual Christmas Party. My instinct told me that Daisy's hickman line was not quite right, I asked one of the nurse specialists to check it and sure enough, it would have probably broken, most likely on her birthday or Christmas, which would have meant a hospital stay until it could be repaired. Fortunately there was time to repair it yesterday, and while I hate Daisy having a repaired line as this now means it has a point of weakness, it is better than a broken line.
The other thing we are having to accept is that Daisy will never be free of the bugs that colonise her - she normally has three main ones ; candida, pseudomonas and ecoli and now our battle is to keep these at a level where she does not become septic with them but in doing so we also have to ensure that she does not become resistant to her antibiotics. She is increasingly resistant to an ever increasing range of antibiotics and this worries all the professonals who care for her. She is currently on a month's course of intravenous antibiotics and has been on treatment doses of antifungals for weeks. We will review the situation in a month and see whether she can switch to prophylactic antibiotics or she will need to switch to another drug.
So ontop of TPN, bladder washouts, dressing changes, regular meds, enteral feeds and all the other stuff that comes with Daisy we now do regular intravenous medication. This is what is needed to keep her at home, so this is what we do, with the assistance of occasional stays at the hospice when we regroup and get our breath back. Daisy is so complicated and her care is now so specialised that it just makes more sense that we nurse her at home. We now have nursing support four nights a week, although I still have to do the TPN and IVs but at least they can administer pain meds while I catch up on sleep.
Being at home for an extended period has meant that at long last we have been able to function as a complete family again. Daisy's bedroom is now downstairs and has become the heart of our home, often she needs to just lie in her bed as her stamina is not great, and the children wander in and out, chat to her, read her stories, watch dvds with her.
Andy and I have been able to be proper, full time, hands on parents with all the children, attending meetings at school, doing the school run, being there when they all come home, getting them back on track with their school work. We were bursting with pride when Theo and Jules turned in the most brilliant performances in their end of term plays at Lantern Arts Centre recently and then the following week Theo just went one better by coming second in the regional finals of a Public Speaking Competition, representing his school. (Here's the link to his speech http://www.youtube.com/watch?v=d17tHznWWaU)
Over and over I have stressed that all my children are special, just that Daisy takes a little bit more of our time. I never think of myself as having a disabled child and three able children, they are all able and unique in their own ways. In fact, if we are going for labels then I very rarelly blog about the fact that my eldest son, Theo has a form of high functioning autism called Asperger Syndrome. Sometimes (actually, most of the time), dealing with the challenges of Asperger's is harder than dealing with Daisy's medical needs. Her needs are physically challenging, Theo's are emotionally challenging - for a few weeks after we brought Daisy home following the last surgery he could not settle, he was so anxious she would be taken back into hospital again. Children with Aspergers need order, routine and predictability, something that can be very hard to achieve in our house so often having held it together all week Theo will have an all consuming migraine which will wipe him out for 24 ours. We have also noticed how Jules and Xanthe have been forced to become independent very quickly, couple this with the challenges of the emerging pre-teen hormones in Xanthe and there have been a few shouting matches and groundings over the past month!
But this is now normality for us, and it's great as we are all under one roof and when the children get up in the morning their sister is still in the house and she is at home when they come home. We can't guarantee how long it will last, it really is one day at a time and as I said in a previous post, small goals - we have ticked a few things off the list - Singing Hands came to school to sing to Daisy and her friends, we visited Santa, she went Ice Skating (in her wheelchair), I saw her school play, we went to the GOS Christmas Party (even with a couple of appointments and a hickman line repair tacked around it!) and next week we have a trip to the Disney store followed by bowling with friends to celebrate her birthday.
7 whole years of life with Daisy, the biggest white knuckle ride of our lives, the biggest highs and the biggest lows and I wouldn't change it for the world!
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
special needs (86) costello syndrome (46) disability (34) Great Ormond Street (21) aspergers (19) TPN (18) cancer (18) carers (16) parenting (14) autism (10) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) diagnosis (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)